Brian Robert & LCH: At the Beach and update

Friday, March 16, 2012

At the Beach and update

On Wednesday we drove over to Port Saint Joe/ Mexico Beach Area and spent Wednesday, Thursday, Friday with three other families. On Thursday Aunt Jess, Uncle Matt and baby Caleb came over to go to the beach with us for a couple of hours. This entire trip was tons of fun, but stressful for Mommy too. Our typically two hour drive to Panama City was WAY longer because we had to stop every half hour to forty five minutes for Brian to go potty.
    We have been dealing with Brian's symptoms of Diabetes Insipidus for a few weeks and had a urine sample and blood work sent off last Thursday the 8th. I called Nemours to find out the results (b/c no one called us) and was told that the urine was normal and the blood work was not tested and I should bring him back in to get the blood drawn and retested. I assumed that since the urine was normal I wouldn't put Brian through anymore unnecessary poking and blood draws. I told the nurse if I was still worried in a couple of days I would call back, but that I was not going to bring him in. We were going to work on limiting Brian's fluid intake and see if maybe he has just gotten in the habit of drinking excessively. (What we were told last time we went through these symptoms in Dec. 2010) The nurse told me that she would check with Dr. Parmley (the doctor we are to see on March 29) and see if that was OK. If I didn't hear from her than it was OK to not redo the lost blood work and wait until Brian's next appointment on March 29th.
    I never heard from her. Assuming all was well with Brian and we needed to limit his fluid intake we continued life as normal just restricting Brian ALL DAY LONG. The requesting and begging for drinks did not stop. My friends even saw Brian lick the valve on a drink dispenser. We had a couple of gallons of pink lemonade or punch made at all times for the kids and the dispenser sat on the counter in the beach house. While we were hustling around getting kids taken care of Brian was sneaking over and licking the valve hoping to get a drop of drink since Mommy kept telling him one drink was enough.
   His frequent need to potty was a source of embarrassment too. He pulled his swim suit down and peed on the concrete next to the hot tub and pool. Not in a bush, or around a corner, but right there in the middle of the action. He peed at the beach two or three times. He was non stop.

We still had tons of fun and enjoyed the fellowship with our friends.

William and Brian had fun at the beach.

Brian's constant thirst didn't take away his silliness. He tried to jump in the picture with baby Caleb.

Florida is beautiful and we will treasure the memories from this time. It was humbling to Mommy to have her friends see the behind the scenes Schreiber's. Brian screamed and cried before bed wanting to go home and wanting Daddy (who wasn't with us for one night). When Brian gets in these moods and we are home I would send him to his bed, but since we were at a condo with friends I just had to hold him and rock him. Of course that made him mad and he was squirming and fussing. I looked like that mom that couldn't handle her own children, but I knew if I let him down he would hit someone or just go cause trouble. Ahh....

anyway, this picture is beautiful. It was a good time despite the growing suspicion that Brian is NOT ok.

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Brian, BB or "B-ber"

Brian is our seven year old boy. He is the third of four children, all born in just four years. Sept 2009 Brian was diagnosed with Langerhans Cell Histiocytosis. He spent seven months on Chemo and steriods. In April 2010 we had his port removed and celebrated "no more chemo!". His treatment from May forward was oral medicine on the weekends and scans/bloodwork every three months. Brian's firt set of scans/follow up with the oncologist in July were wonderful. We didn't quite make it to his second set of scans three months later in October. In late July/ early August we started noticing suspicious bumps on his scalp and a rash on his private area. On Sept 15, 2010 we took Brian to his oncologist. That appointment revealed the possibilty of more chemo. September 21 we had a biopsy that two days later revealed that Brian's LCH was back. We immediately had surgery to implant a port and in Oct 2010 started a second journey through chemotherapy and steroids for our little Brian. In March 2011 Brian's chemo drugs were changed around as his new protocal was not working. Brian was still presenting symptoms. We went back to the original combination of drugs but this time instead of being on them six months the plan was for twelve months. Brian completed his second round of chemo March 8, 2012. Even though Brian was completing treatment, we started noticing symptoms of Diabetes Insipidus in March 2012. He was diagnosed with D.I. March 22, 2012. His new diagnosis was considered a relapse for his LCH. Brian's third round (or fourth protocol depending on how you look at it) of chemo and a totally different protocol began April 2012. He had chemo five days in a row followed by a three week break for 12 months. He completed that protocol the first week of April 2013. In July of 2013 Brian had his port removed and we were over the moon excited about NO MORE CHEMO. In October of 2013 Brian had a recurrence of symptoms. He took six months of oral chemo. In April of 2014 he had another MRI. It was decided that Brian could stop treatment. By August-September 2014 he started showing symptoms again. October 2014 we are back in Houston to see what the next step will be for treatment of Brian's LCH.